Development of the PRECIOUS Short-Form (PRECIOUS-SF) quality of care measure for children with serious illnesses

Abstract Background Rising number of children with complex medical conditions necessitate regular healthcare quality evaluation to achieve optimal outcomes. To address the need for a periodic and quick assessment of quality of care in serious childhood illnesses, we developed a short version of prev...

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Main Authors: Felicia Jia Ler Ang, Yin Bun Cheung, Mihir Gandhi, Rahul Malhotra, Truls Ostbye, Chetna Malhotra, Cristelle Chu-Tian Chow, Poh Heng Chong, Zubair Amin, Teresa Shu Zhen Tan, Eric Finkelstein
Format: Article
Language:English
Published: SpringerOpen 2025-01-01
Series:Journal of Patient-Reported Outcomes
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Online Access:https://doi.org/10.1186/s41687-025-00844-x
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Summary:Abstract Background Rising number of children with complex medical conditions necessitate regular healthcare quality evaluation to achieve optimal outcomes. To address the need for a periodic and quick assessment of quality of care in serious childhood illnesses, we developed a short version of previously validated 45-item PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS) measure. Methodology PRECIOUS was administered by parents of children living with serious illnesses at two time-points (baseline and two weeks) in an online survey. PRECIOUS Short-Form (PRECIOUS-SF) items were derived from the full PRECIOUS measure, which comprises five scales, using an exploratory factor analysis and best subset regression. The measurement properties of PRECIOUS-SF scales were assessed using the concurrent validity using Pearson correlation (r) with the PRECIOUS scales, internal consistency (Cronbach’s α) within each scale, convergent validity with overall QoC rating, and test-retest reliability (intraclass correlation coefficient, ICC) between baseline and two-week responses. Results PRECIOUS-SF included 10 items across four scales – (1) access to financial and medical resources (2), collaborative and goal-concordant care (3), caregiver support and respectful care and (4) reduction of caregiving stressors. A fifth and optional scale was suggested for hospitalization-specific processes. PRECIOUS-SF scales correlated strongly with corresponding PRECIOUS scales (r = 0.91 to 0.98) and demonstrated satisfactory internal consistency (α = 0.77 to 0.91) and test-retest reliability (ICCs > 0.70). Conclusions PRECIOUS-SF demonstrated internal consistency, convergent validity, test-retest reliability, and concurrent validity with PRECIOUS. PRECIOUS-SF offers a practical tool for routine quality of care assessment in pediatric serious illnesses for promoting timely service evaluation and quality improvement.
ISSN:2509-8020